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Cancer: Prostate Message Board

  • round II

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    Old 08-03-2022, 07:35 PM   #1
    edmond1971
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    round II

    In 2012 I had elevated PSA and GS6(3+3) and this led to RALP in June 2013 with post operative work showing clear margins and GS7(4+3) and then PSA of 0.0 in Summer 2013, Summer 2014, Fall 2015. Incontinence and erectile dysfunction did not occur and things work properly with no issues. Unfortunately I stopped testing, and seeing doctors, and Monday I had a physical with a new PCP and the PSA is 9.4, which isn't good. Lots of mystery exists in terms of what rate this has increased. In 2016 I gained 50 pounds and led a sedentary lifestyle, but in the past 8 months I've become active again and lost the 50 pounds and I find myself in great physical shape. Certain strenuous activities that are new to me (painting, drywalling, landscaping, etc.) this summer have caused my body to feel a bit sore, but I attribute this completely to the activity, less so to cancer.

    Today I sent my medial records to my new PCP and they are getting me connected to an oncologist.

    This forum was immensely helpful with my first round of prostate cancer and appreciate the support.

    Thank you

     
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    Old 08-04-2022, 05:40 AM   #2
    Prostatefree
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    Re: round II

    I'm sorry to hear this. Please continue to share.

     
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    Old 08-04-2022, 06:39 PM   #3
    CentralPaDude
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    Re: round II

    Quote:
    Originally Posted by edmond1971 View Post
    ...but in the past 8 months I've become active again and lost the 50 pounds and I find myself in great physical shape.
    Awesome. You've got the strength and willpower to fight this, Edmond. Full speed ahead!

     
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    Old 08-04-2022, 08:10 PM   #4
    Eonore
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    Re: round II

    Dear Edmund,

    Sorry to hear that this has happened. If time, finances and insurance allow, I would look to arrange care at Dana Farber in Boston. It is one of the best cancer hospitals in the world. I would make appointments with both a medical oncologist and a radiation oncologist. More than likely a Pet scan will be ordered to try and determine if the cancer is confined to the prostate and pelvic area. If it is, hopefully, you will be a candidate for salvage radiation and a course of hormone therapy. Even if it is not confined to those areas, you may be classified as oliometastatic, where additional spots can be attacked with spot radiation.

    I wish you good luck and keep us posted.

    Eric

     
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    Old 08-04-2022, 08:15 PM   #5
    phil138
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    Re: round II

    You’re leaving some information out it doesn’t make any sense I’m really sorry what happened to you but either the urologist left some prostate Remaining or your margins were not clear it’s very unlikely after that diagnostic of prostate biopsy I’ve had the same thing 3+4 and I’ve been undetectable under two years somethings not correct were you undetectable for three years or just one year and then you start testing how long did you start testing for after two years if you’re undetectable there’s very unlikely chance you’re gonna have a higher PSA usually within the first six months of operation I’m really happy you have no side effects I’m still having some incontinenceIt seems like they might’ve missed some lymph nodes that were infected or they took or left some prostate out that’s the only way it could happen I think 9.4 after removal of the prostate is serious you need to get a new Pmsa Pet scan that’s available now you don’t waste your time with bone or CT scans the scan will trace your PSA and tell you exactly where it’s in the body hopefully it’s in your area I’ve never seen this before like the way you said it there’s something missing

     
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    Old 08-05-2022, 06:07 AM   #6
    CentralPaDude
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    Re: round II

    @phil138, he had a seven year break in PSA testing, I assume thinking he was free and clear.

     
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    Old 08-05-2022, 08:06 AM   #7
    edmond1971
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    Re: round II

    Quote:
    Originally Posted by Prostatefree View Post
    I'm sorry to hear this. Please continue to share.
    Thank you and will do.
    Quote:
    Originally Posted by CentralPaDude View Post
    Awesome. You've got the strength and willpower to fight this, Edmond. Full speed ahead!
    Thank you and I’m ready and committed to getting this taken care of. My prior “round I” had the impact to give me a new perspective and new chapter on life and I left a corporate job and created an environmental non-profit, but unfortunately the way it unfolded worked great for the environmental cause, but it didn’t put me in a good mental or physical state. So, I moved on from that chapter and now entering a new one, ironically, it starts with my prostate issues.
    Quote:
    Originally Posted by Eonore View Post
    Dear Edmund,
    Sorry to hear that this has happened. If time, finances and insurance allow, I would look to arrange care at Dana Farber in Boston. It is one of the best cancer hospitals in the world. I would make appointments with both a medical oncologist and a radiation oncologist. More than likely a Pet scan will be ordered to try and determine if the cancer is confined to the prostate and pelvic area. If it is, hopefully, you will be a candidate for salvage radiation and a course of hormone therapy. Even if it is not confined to those areas, you may be classified as oliometastatic, where additional spots can be attacked with spot radiation.
    I wish you good luck and keep us posted.
    Eric
    Thank you for the insight and perspective and suggestions. I do not have the Cadillac health plan that I had in 2013 so I will likely be staying local in Rhode Island, but as this evolves, I will certainly tap into retirement funds as needed. I am scheduled to meet next week with a MO and initiate a baseline for the discussion. Will keep you posted.
    Quote:
    Originally Posted by phil138 View Post
    You’re leaving some information out it doesn’t make any sense I’m really sorry what happened to you but either the urologist left some prostate Remaining or your margins were not clear it’s very unlikely after that diagnostic of prostate biopsy I’ve had the same thing 3+4 and I’ve been undetectable under two years somethings not correct were you undetectable for three years or just one year and then you start testing how long did you start testing for after two years if you’re undetectable there’s very unlikely chance you’re gonna have a higher PSA usually within the first six months of operation I’m really happy you have no side effects I’m still having some incontinenceIt seems like they might’ve missed some lymph nodes that were infected or they took or left some prostate out that’s the only way it could happen I think 9.4 after removal of the prostate is serious you need to get a new Pmsa Pet scan that’s available now you don’t waste your time with bone or CT scans the scan will trace your PSA and tell you exactly where it’s in the body hopefully it’s in your area I’ve never seen this before like the way you said it there’s something missing
    Thanks Phil! I agree, nothing about the mystery of life and health makes total sense, and I appreciate the opportunity to interact with all of you. I re-read the operative and pathology report and the “margins were uninvolved” and they “did not take lymph node samples”. I had the surgery in June 2013 and had the follow-up with the surgeon in September (PSA 0.0) and then again in 2014 and October 2015 with same results.
    Where my original “round I” gets complicated/interested is that I suffer from “proctalgia fugax” (PF) and advocating for its solution is how I found my original prostate cancer (PCa), as I had no symptoms, and my PSA was 1.8 in the years prior. All my doctors agreed that addressing the PCa would not address the cause of the PF and no one was really has a solution for PF. I mention this because “perhaps” the muscle cramping (it happens 6 times a year) has some prostate cells in it, and the timing is that it results in releasing PSA, not sure, who knows… I appreciate your input and hope your incontinence improves. Thank you

     
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    Old 08-05-2022, 11:12 AM   #8
    IADT3since2000
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    Re: round II

    Hi Edmond and welcome to the Board!

    As you may know, your prognosis for surviving this disease is excellent. Some time ago the experts at Johns Hopkins looked at their extensive database for RP patients who recurred, and they found that three factors made a huge difference in assessing recurrence from mild to serious/life threatening. The three factors were PSA doubling time (PSADT - Yours was on the good side at least at the start), a post-op Gleason of lower than 8 (you, versus 8 to 10), and three years or more before your PSA the recurrence benchmark of .2, where you were very likely on the good side. If all three were on the good side, survival at the 15-year point was extremely good. Though they have not reported on survival beyond that point, patients very likely outlived their cancer.

    If you get another PSA test, preferably two, before you begin therapy, you can get some handle on your PSADT. It's wise to have the same lab do the test and do it with the same type of PSA test; if your PC orders another one, it would probably be the same lab and type of test; you could request this just to be sure.

    Even a fairly short gap from your previous PSA should give some help, and the PSADT may prove a useful piece of information in your case, possibly aiding a decision regarding choice of advanced scan. One thing you would be likely to learn is whether you have a very short and dangerous PSADT, which is highly unlikely. I just used the PSADT calculator at the Memorial Sloan Kettering (in NYC) website for prostate cancer for your case, entering a value of 0.1 (wouldn't let me enter 0.0) for 10/15/2015 for your "fall of 2015", and a value of 9.4 for 8/1/2022. The result was a PSADT estimate of 12.4 months, which is quite good. However, if your PSA was level for a longer period - likely, and then started rising, the PSADT would be shorter.

    I too think that you are likely to have "oligometastatic" prostate cancer recurrence - in other words, just a few spots, if indeed you have any detectable spots at all, also a likely option as many recurring patients have advanced scan results with no detectable spots. The concept of oligometastatic prostate cancer was still in its infancy when you had your RP, but now there has been quite a bit of research on it. Most patients, as Dr. Kwon's team's research was the first to show, if they have any metastatic spots, have oligometastatic disease - rather than wide-spread disease, in the early period after the cancer recurs. I'm not sure whether your PSA of 9.4 indicates that you are still in that period, but an experienced medical oncologist should know.

    The current level of your PSA is plenty high enough for several of the advanced scans to detect what is going on. Some centers are using both a PSMA/CT combo and a non-PSMA/CT combo of advanced scans. Most patients have cancers that include PSMA (Prostate Specific Membrane Antigen - not actually entirely specific to prostate cancer cells, but close), so the PSMA scan will work for them, with the CT part making the anatomic location and details clear, but some patients have cancer cells that do not include PSMA, so a scan like the carbon-11 (C-11) choline or acetate scan may be needed, or some other non-PSMA scan.

    I too think Dana Farber would be a good choice if it fits your situation. Of course Memorial Sloan Kettering is also not that far away and is one of the world's leading centers for prostate cancer. Some of us are lucky enough to have excellent local medical oncologists, or we have very straightforward cases, so we don't need expertise at leading centers.

    Good luck!

    ….Jim

    - - - - - - - - - - - - - - - - - - - - - - - --
    22 years as a survivor. Doing well. Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA, for some reason based on a less sensitive test on 7/20/2021 was <0.05, still apparently cured in my ninth year since radiation (PSA as of 12/2/2020 was <0.01). (T 93 as of 12/2/2020.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs. Barely noticeable side effects from radiation; continuing low T, likely do to long use of ADT, but good energy and adequate strength. I have a lot of School of Hard Knocks knowledge, and have followed research, which has made me an empowered and savvy patient, but I have had no enrolled medical education. I have also had 225 undergraduate classroom hours just in statistics and experimental design, plus more in graduate school, which dwarfs what most doctors have, and that has made my “hard knocks” experience more meaningful. What I experienced is not a guarantee for all but shows what is possible.

    Last edited by IADT3since2000; 08-08-2022 at 11:29 AM. Reason: Deleted change.

     
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    Old 08-07-2022, 07:26 PM   #9
    phil138
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    Re: round II

    Thanks for the reply I think the major issue that the surgeon did not do was take out some lymph nodes when I had mine done they were small which is great but he decided to take two out just to check that could’ve been why they might’ve been in your lymph nodes and they didn’t fully do a pathology on them
    I think the surgeon should’ve done that it would’ve not been a big deal once he was in there my pathology was exactly like yours except I was 3+4 all my margins were good and my cancer was enclosed without any breach but he decided to take two lymph nodes out just in case to check if there’s any cancer in the area a great surgeon will always remove a couple of lymph nodes just to make sure
    I am two years out from surgery and have a negative PSA which is great I’ve talked to my Urologist and he basically said if he had this cancer he would like to have mine with the pathology Report
    I’m really sorry that you have to go through this what I’ve understood fully by many prostate cancer victims is once you have surgery any inclination of a spread should be done with radiation right away and hormone treatment I am really gonna get my PSA done every six months and I’m hoping it will stay negative I’ve seen too many people that had treatment after that have burns and other issues but hopefully you won’t have that the key is to get it done quickly and fast the sooner the better I’m wishing you all the luck take care

     
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